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Posts Tagged ‘communication’

It seems that lately I have been finding a lot of great book resources.  This one is a real gem.  I wish it had been around years ago when Pookie was first diagnosed.

autistics logistics

 Autistic Logistics, by Kate Wilde

Autistic Logistics is a new book set to be released in January, 2015. If there were ever a book that should be made available when a parent gets the autism diagnosis, this is it. The author is a Director of the Son-Rise Program. The ideas she presents in this book are based upon the Son-Rise methods.

As the parent of an autistic child, I can attest to the difficulty parents can have in teaching the basics of self-care to these precious children. Developmental skills, such as toilet training, can be a very difficult thing to help your child accomplish. Self-regulating their emotions to curb meltdowns and tantrums is another tough lesson to help the children learn. This book gives solid advice and examples of how to tackle the most basic of issues that parents of autistic children face.

Here is a summary of the book that was provided on Amazon,

Have you ever wished that your child with autism spectrum disorder (ASD) came with a manual? This book provides just that, offering clear, precise, step-by-step advice on everything you want to know, including:

– How to toilet train your child without pushing or pressuring
– How to get your child to sleep in their own bed and through the night
– What to do when your child tantrums, hits or bites
– How to introduce new foods, without a fight

Based on decades of experience, Kate Wilde tackles these day-to-day issues and more, using tried-and-tested techniques to help you transform the challenges of home life and create harmony. The unique approach featured in the book, which encourages you to support your child’s need for control rather than fight against it, can have transformative results. Not only will you learn to see through your child’s eyes and help your child in a way that honors his/her specialness, but you will also begin to free yourself from the pressure and discomfort that can so often accompany everyday challenges.

Catering to all age ranges and points on the spectrum, this book will be of immeasurable value to parents and caregivers of children with autism, other family members, as well as teachers and teaching assistants.

As I read through the book, I thought of just how timely it was for it to come to my notice at this time. Our own child is reaching that age when toilet training is being addressed. Using this one area as an example, let me say that this book has the most useful and detailed information that I have ever read. Ms. Wilde starts off by taking a look at poplar attitudes towards toilet training that are actually making the process harder. She then breaks down the reasons why some accepted methods do not work very well. One case in point being to place the child on the toilet every 30 or 60 minutes. The problem with that is you often have a child soil or wet their diaper in between trips to the toilet. This can become a frustration to both parent and child.

What she suggests is something that just makes sense. Keeping a diary of the times your child eats, drinks, and soils/wets their diapers. Start noting the time intervals and once you see a pattern, you can get the child to sit on the toilet prior to when they would normally go in their diapers. She goes further into the exact process, but it is a very good method to try out. It makes far more sense to me. Most people have a set routine, a body time clock. For some, they always have to go to the toilet 30 minutes after a meal. Going on that theory, if your child has a routine, you can get them to the toilet before that set time arrives. This greatly increases their chances for success in the toileting.

There are many other areas of development which are addressed in the book. Each are ones that we face often as parents of autistic children. While the child’s therapists can offer advice, the parents really need solid guidance at home as well. This is where the book comes in. The clear presentation of ideas is done in such a way that it is easy to implement in the home.

I strongly recommend this book to anyone who is a parent or caregiver of a person with autism. It is a book that I wish had been around when our son was first diagnosed.

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At Therapy Works, where Pookie goes for his OT and Speech therapies, they have a really simple style of visual schedule.  It is one of those ideas that have you asking, “Why didn’t I think of that?”  Well, here is the schedule strip.  I made one for him to use here at home.  Much easier than the yardstick idea that I had.

You only need 4 things to make the schedule strip: wooden ruler, self-adhesive loop tape (the fuzzy part of the hook and loop tape), a pair of scissors, and a length of ribbon.

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I cut a piece of the loop tape that was about 11.5″ long.  I adhered it to the back of the wooden ruler so that the hole near the end of the ruler was still showing.  Next, I threaded a ribbon through the hole and tied it to form a hanging loop.

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That is it!  Your child now has a very portable schedule strip to use.  I am using this now for Pookie.  I place his morning schedule on the strip.  He has a little container into which he places the PECS cards as we do each activity.  The PECS style cards that I have for his homeschooling are about 1″ square.  You can easily make them on the SEN Teacher page I linked to in my last post.   Just use your own graphics or ones found online through a Google Images search.  You can also find them already designed on Pinterest.  The website which I used to find the ones shown here are from Homeschool Creations.

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Story Stones

I have been finding the cutest idea on Pinterest lately. They are called Story Stones. These smooth stones are small enough for preschoolers to handle, yet too big to be a choking hazard. Buying a set of story stones can be pricey. Today, I found a preschool blog called Pre-School Play that tells how she made them herself. She also shows a good number of examples of the ones that she made. I am thinking of so many ideas for using this idea.  Alphabet letters, numbers, stones painted like dominos, and of course the story elements.

Here are some more story stone idea links that I found that are very inspiring.

Easter Story Stones includes the story

Fairy Dust Teaching has a photo tutorial on making the story stones

Adventures at Home with Mom has a great post about the benefits of story stones along with examples of the ones she has made.

Crafty Mom Share has a blog post about the Nativity story that includes a picture of the Nativity story stones she made.

Thrive 360 Living has a great example of story stones they made for the book, The Very Hungry Caterpillar.

My Small Potatoes has a great picture tutorial on hand painting story stones.

 

I am so excited to give this craft idea a try.  I am always looking for new ways to incorporate pictures or other hands-on elements into story time with Pookie.  I can see so many uses for this, including using them for story sequencing activities.  These websites were very inspiring.  Making a set of story stones for the Nativity would be a great gift idea for the little ones in the Children’s Church class.  Maybe make some for other Bible stories using elements of each story to paint or decoupage onto a stone.  The ideas are only as limited as our imaginations!

Enjoy!

 

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One of the challenges that you face with a non-verbal child is teaching them phonics.  The question is always  present: “Do they understand the letter sounds?”  You cannot ask them what sound a letter makes.  They are unable to respond in that way.  So, what do you do?

In homeschooling Pookie, I am using 2 methods to teach him to read.  The first is sight words.  I bought a set of flashcards from a teaching supply store.  These cards are photographs, not drawings, of common things.  The name of each item is on the cards alongside of the picture.  I cut the words off and made a matching game.  I began with 2 pictures of items he recognises.  After he consistently labels them correctly, I add one more picture/word set to the game with no more than 6 sets at any given time.  You can make your own set easily.  Take pictures of things around our home.  Print the pictures and make labels for each.  In the beginning, you can use a duplicate set that has the word/label already with the picture so that your child can use it as reference.  Personalizing the pictures to what is relevent to your child makes the lessons more meaningful to them than generic pictures.

learning alphabet

The other way that I have been teaching Pookie is to use a letter chart.  I purchased the chart at a teacher supply store.  In teh picture above, you will notice that I have covered all but the actual letters we are working on.  This helps to prevent him from becoming confused or overwhelmed.  As I add a new letter to the lessons, I remove the cardstock covering the letter.  To use the chart, I name a letter or give a phonetic sound.  Pookie will then point to the answer on the chart.  This allows me to see if he in understanding the phonetics.  Once we reach the point of consonant blends, I will make a new chart of those.

I am sure that there are many other ways that you can teach a non-verbal child their alphabet and phonics.  These just happen to be the methods that we are finding effective for our son.

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As we teach our son, I am becoming very familiar with the prevalent attitude of what is expected for him.  As I has mentioned before, the majority of cases of autism are moderate to high functioning. Society’s expectations seem to focus on the idea that ALL autistics are able to perform at these levels.  Nearly everyone can relate a story about an exceptional autistic person who is a genius or a protege in one area or another.  While I do agree that every parent feels that their child has talents, not every autistic child is a savant, genius, or gifted protege.

In our family, our son is treated as a child of his chronological age in most areas.  Of course there are certain situations where we do accommodate for his delays.  In most situations though, we expect him to behave as we would a typical child.  We know our son well enough to tell the difference from an autism related meltdown from stimuli and a child who is simply having a tantrum.  There is a definite difference between the two and we handle each situation appropriately as they happen to arise.  We do not and will not ever allow our son to use his autism as an excuse for bad behavior or doing work below his ability.

There are times that we do have to make allowances.  One example is that it is very difficult for him to write his letters.  Holding a pencil, crayon, or marker is very challenging for our son.  He lacks the ability to grip a writing tool well enough to write without assistance.  He also finds writing lower case letters more difficult than upper case.  This is one area where we do make allowances.  Is it truly necessary for him to be required to write in lower case?  Isn’t it more important that he be able to write in any way that he can?  For now, he is doing upper case only.  We try the lower case, but do not demand it.  I am sure that many parents would not agree with this but that is fine.  Each parent has to focus on what is best for their own child.  It is more important that our son can write than that he can write in various forms.

It is very easy for other parents to share their opinions of what he should be learning and when.  Many have the opinion that the amount of learning and skill development that he demonstrates should be equal to that of a higher functioning or a typical child.  Maybe not at his chronological age level, but at a level as close to it as possible.  Some even express the idea that he should be medicated so he doesn’t act autistic.  News flash! My son IS autistic.

Medicating him will not get rid of his autism.  Why should he be medicated to simply make him more “socially acceptable” to others?  I can think of far worse social behaviors than for my son to flap his hands or walk in small circles.  Why is it so important to outsiders that an autistic child not look autistic?  Are they really wanting the child to appear like others for the child’s sake or their own?  I believe that my son has no concern for how others’ see him.  If he were to develop that level of self-awareness, it would be a giant leap forward.  If it disturbs anyone to see him flap his hands, that is THEIR problem, not his.

I don’t expect society’s version of perfection for our children – autistic or not.  They are already perfect in God’s eyes.  He created them and allowed them to be as they are for a purpose.  Who knows?  Maybe our son’s autism is a lesson for those who meet him.  Maybe a lesson in how to have the same type of unconditional love and acceptance for others that the Lord has for each of us.

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Can I vent a bit here?  Over the past 3 years, since our son’s diagnosis, I have found a troubling issue.  To date, I have found not a single support group or organization who has support for families with children who have Classic Autism.  Shocking, right?  You would think that there would be something out there for us, but I have yet to find one.  It seems that the support, even in groups with the words “Autism support” in the title, are mainly a support resource for families with an Asperger’s or PDD-NOS diagnosis.  So, what is the big deal?  Let me first explain that while they are all on the spectrum, there are 3 big differences between Classic Autism (aka Autism Disorder, Infantile Autism, and Kanner’s Syndrome) and the more understood, Asperger’s Syndrome.

According to the Autism United, there are 3 primary differences between Classic Autism and Asperger’s Syndrome.

1. Cognitively, those with Classic Autism have delays that they often never overcome. Those with Asperger’s are often very intelligent and test at or above average in cognitive abilities.

2. Those with an Asperger’s diagnosis may have some speech delays in part from lack of use but are on track with their peers in speech ability.  Those with a Classic Autism diagnosis have speech developmental delays and a large percentage (I read over 80% on another website) never develop an ability to communicate through speech.

3.  While those diagnosed with Asperger’s will typically be uncomfortable in social situations and often behave in a socially awkward manner, they often are wanting that social contact.  Those with Classic Autism are typically completely unaware of any need for social interactions.

What these differences mean to me as a parent going to a parents’ support group is that when parents of Aspies or those with PDD-NOS are talking about how therapies, supplements, dietary changes, and in some cases medications have helped their kids, I am at a loss.  There is very little common ground.  While our children have the spectrum in common, the daily issues that comes along with it is different.

Some parents complain about their child being socially awkward and at times violent when things don’t go as the child thinks that they should.  Our son often appears to not even notice there are others in the room.  If a toy is taken from him, he simply ignores that and walks away.

Some parents talk about how difficult it is to get their child to learn social stories and how to appropriately talk to others.  Our son never speaks other than the rare chatter/vocalization that you might expect from a 6 – 8 month old who hasn’t learned letter sounds or words yet.

Parents talk about the wonders of ABA therapy and what marvels it has brought to their child’s life.  I am happy for them that it worked for their child.  It was a total flop with our son.  I have learned to work around that, but the hardcore ABA supporters are shocked that I would not force ABA onto our son whether he complies or not.  We did try it for a few months, but got nowhere.  I found a gentler approach worked best for him and got more progress with it.

Many parents that I have spoken with are firm believers in the wonders of the DAN doctors’ protocol of supplements and other treatments.  While I and my husband do agree that a healthy diet is best for everyone, we do not believe the DAN approach to be the cure-all that many parents say it is.

These are only a tiny bit of the differences that we have found that demonstrate the difference between the issues we face in our home compared to the issues that parents of Aspies and PDD-NOS children face.  Aspies and PDD-NOS have a much higher functioning level than our son.  That in and of itself makes a huge difference in the way our lives are lived each day.

Sadly, I have never found a group that has even one member/family that has a child with Classic Autism.  The popular nationally known Autism organizations cater to the moderately to high functioning diagnosis.  It makes sense in a way. Over 75% of the diagnosed cases are Asperger’s or PDD-NOS.  Those with classic Autism only make up about 20% of all diagnosis.  It is understandable that the information and trainings are geared towards the majority of cases.  In the years since our son’s diagnosis, I have always received email updates of conferences and workshops to train professionals and families about how to work with those diagnosed with autism spectrum.  I have yet to see even 1 workshop or session at a conference that addresses something that we can do with our son.

The therapists that we had through early intervention were a mess to deal with. Even though they were provided a copy of the detailed report for our son’s diagnosis and what he would need, they ignored it completely.  Instead, they had their own agenda of what they wanted to do and acted as though he were a higher functioning child instead of working on building up from where he was currently.

I think one of the most ugly and hurtful parts of this whole thing is that there are those with higher functioning kids who have come right out and said that if we wanted our son cured, we would do the therapies, drugs, and treatments they have used. One came right out and said (quoting Ms McCarthy, I believe) that parents who don’t do the DAN protocols with their children are not wanting their kids to get cured.  That is a positively evil thing to say!

Classic Autism is a neurological disorder.  It is NOT curable through supplements, therapies, drugs, or diet.  No matter what we do, our son will always have autism.  That is the fact.  If the protocols and such helped their kids, that is great.  Don’t you judge us however if we do not see the benefit in doing things YOUR way.

I am with my son 24 hours a day, 7 days a week, 52 weeks a year.  I know what works with him and what does not.  I know his dietary issues and we have changed our family’s diet so that we all are eating as he does.  We are working on teaching him and our daughter to do ASL signing in conjunction with speaking to him.  He has a method of communicating with us that is unique to our family.  His method is one that makes his feelings and wants obvious to others around him.  We have learned that he can communicate through pointing to pictures or objects.  My next project is taking a lot of pictures of his favorite things, activities, and foods to make a communication board for him to use.

In homeschooling Pookie, we have found that he needs many breaks in between his activities.  About the only time he will sit still is when he is painting or sitting with me as I read to him.  He does listen though, even when walking in circles around the room.

Our days with Pookie are not complicated, but they are definitely different from a typical child his age or a child who is higher functioning.  In some ways, he is like a young toddler instead of his nearly 5 years of age.  There are basic skills, such as feeding himself, that he is unable to do.  Not because we spoil him, but because he seriously is unable to do it at this time.  We know he will one day, and encourage him to try, but for now he is not able to do so.  At his age, we still have to aid him in dressing.  He can do a little, such as put his arms into the sleeves when you hold his shirt.  But he doesn’t even attempt to try on his own. The list goes on and on.

I have decided to post more on this blog about what daily life is like. I will of course have homeschooling and family information. With such a lack of information and support for families with low functioning Classic Autistic children, I want the blog to be a place where they can find someone who is going through it too.  Maybe even find encouragement from time to time.

I have felt so alone in this journey at time.  Yes, I have my husband and my faith in the Lord, as well as the prayers and encouragement of our church family.  I have never met anyone though who has a child like ours.  Someone who is walking along this path also.  A person who understands the daily challenges that we face in a world where our children’s needs are often overlooked by professionals who are better trained to work with the moderate to higher functioning children.

I don’t want others in our situation to feel alone.  Maybe, along the way, we will learn that we are not alone either.

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Wow!  I hadn’t realized how long it had been since my last post.  With the holidays and all going on, the thought of posting a blog had truly not been on my mind.

The kids and I are falling into a routine now that is a comfortable fit for us all.  We rise early, then after breakfast, Little Miss starts on her workboxes.  Math is usually her first assignment.  She enjoys the lessons but especially likes to get it done and out of the way so she can read and do the hands-on lessons.  Some days, I have a file folder game tucked into a workbox  for her just to give a bit of review as well as variety.  Her favorite surprise in a workbox was a little “”tea party” card. By the time she was ready for that workbox, I had some little sandwiches, buttermilk scones, and jam ready as well as water heated for our tea.  She loves these little unexpected moments.  I enjoy them too.  It just makes the experience more fun for both of us.

Pookie is going slowly but steadily through his schooling.  I find that most of his schooling is a 3-fold process.  First, I read to him a lot each day.  Secondly, I we do hands-on projects that build on his fine motor development as well as creativity.  The third part is the most important, in my opinion.  I talk to him about everything.  If he is hanging out with me, I talk about what I am doing, often enlisting his help wherever possible.  I talk to him as though he understands every word that I say.  I ask him questions that I know he is able to answer in his own way.  One example was when I asked what he wanted for lunch.  Now, just to make it clear, I want to remind you that he is nonverbal.  Pookie walked to the refrigerator and waited for me to open it.  Once opened, he pointed to the carton of eggs.  I got them out and asked if he wanted scrambled eggs for lunch.  He walked into the pantry and pushed my hand towards the loaf of bread.  We took it back into the kitchen and I asked if he wanted eggs and toast.  He gave no reaction, so I tried another guess.  Did he want french toast?  At that, Pookie smiled at me.  Okay, french toast for lunch it is!  Now, that may seem a simple thing to most people.  Here is what I saw happen.  1.  Pookie expressed a need – he wanted to eat.  2. Pookie expressed a choice in his meal – eggs & bread.  3. He knew that to make french toast, I use both eggs and bread!  That in itself shows a cognitive understanding at a higher level than he was thought to have.  During all of this, he never spoke a word but his needs & preferences were made very clear.  It was a huge step forward.

We are working on the holiday preparations still.  We were given a small tree to use.  It will be our first Christmas tree.  I made some clay which we are using to make the ornaments.  Little Miss came up with a wonderful idea as a family project that she is leading.  I cannot speak of it here yet as members of our church read the blog and it is something she is doing for them.  It is humbling that she thought of it however.

 

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